Shining a light on thalassaemia


A FIVE-MONTH campaign to raise thalassaemia awareness saw secondary school students creating a variety of content and taking to social media to convey their understanding of the disease to their peers.

Called NowyouSEEme 2021, the recently-concluded campaign was aimed at educating secondary school students on the medical condition, encouraging them to be better informed, and to play an active role in society to manage and eventually eradicate the disease.

More than 13,000 students and teachers from 50 schools across Kelantan, Terengganu and Pahang were involved in the campaign activities which included competitions organised in their respective schools.

The students came up with infographics, short films, music videos, posters and TikTok videos – each talking about thalassaemia in their own unique way, according to a press release by campaign organiser Repsol Malaysia dated Sept 15.

SMK Paka, Terengganu, scored the highest number of points accumulated from its students’ participation across the campaign initiatives, walking away with an RM5,000 cash prize.

It also won awards in the “most creative campaign” and “most popular campaign through votes” categories.

SMK Bentong and SMK Muadzam Jaya – both in Pahang – emerged runner-up and second runner-up winning RM4,000 and RM3,000 cash prizes, respectively.

SMK Bentong also bagged the “best performance”, “best music video” and “highest involvement for thalassaemia quiz” awards.

Repsol Malaysia director Pablo Ortolá Martínez said the organisation was encouraged by the students’ involvement in the campaign, held in collaboration with the Health Ministry and the Education Ministry.

“Beyond the contests, many sought information on thalassaemia through materials available on our campaign portal,” he said.

He added that over the last eight years, Repsol Malaysia has been committed to supporting the local thalassaemia communities and the efforts to create awareness.

“This achievement with the NowyouSEEme campaign is an important milestone to us as we engaged a different segment of audience – and an important one – the students,” he said.

In the press release, Repsol Malaysia said it is supportive of the government’s goals towards reducing thalassaemia birth rates in Malaysia by as much as 95% by 2038.

Health Ministry secretary-general Datuk Mohd Shafiq Abdullah said the thalassaemia awareness campaign was important because the disease can only be best managed when detected early.

“What this campaign has achieved is to help tell the thalassaemia narrative through a fresh, different perspective – one that is relatable to the audience in the same generation,” he said.

Education director-general Datin Seri Nor Zamani Abdol Hamid said the campaign reflected how creative students are in simplifying complex topics like thalassaemia and how savvy they are in leveraging social media channels as a medium of learning.

“Digital learning is important to circumvent this Covid-19 pandemic as the students learn to grow accustomed to this norm.

“The future of education lies in digital platforms and goes beyond the classroom syllabus as the next generation shapes to become more holistic members of society,” she said.

Thalassaemia is an inherited condition that disrupts the production of red blood cells, in turn affecting the function of the cells and causing the person to easily feel tired, weak, or have shortness of breath.

Regular blood transfusions are the most common method of treatment, which is a lifelong procedure.

Based on the 2018 Thalassaemia Registry Report, Sabah recorded the highest number of thalassaemia cases in Malaysia with a total of 1,814 patients, accounting for 22.72% of the cases.

This was followed by Selangor, Kedah, and Johor with 1,169, 694, and 637 patients, respectively.

There are 110 government hospitals in Malaysia actively managing thalassaemia patients.

Out of the 7,984 patients, the 11-to-15 age group has the highest number of patients with 1,394 patients (17.46%), followed by the 16-to-20 and six-to-10 age groups with 1,286 (16.11%) and 1,272 (15.93%) patients, respectively.

The data indicates a smaller number of the patients above 50 years old with 278 patients (3.48%).

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